Stage 4 patients on Vemurafenib
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Stage 4 patients on Vemurafenib

› Forums › General Melanoma Community › Stage 4 patients on Vemurafenib

  • Post
    • February 5, 2014 at 5:13 pm
    starletwoman2007
    Participant

    Hi all 

    I have recently been diagnosed with stage 4 mm in my brain, stomach and liver and that surgery is not an option. I have the BRAF gene so have been started on Vem, but was told that it will only work for 6 to 12 months. Therefore, i was wondering whether others could tell me about their experience with vem and whether the time scales are realistic? 

    Thanks 

    Sally

Viewing 11 reply threads
  • Replies
      • February 5, 2014 at 5:41 pm
      Richard_K
      Participant

      Sally,

      For what it worth, March 3rd will mark 48 months for me on vemurafenib.

      • February 5, 2014 at 5:41 pm
      Richard_K
      Participant

      Sally,

      For what it worth, March 3rd will mark 48 months for me on vemurafenib.

      • February 5, 2014 at 5:41 pm
      Richard_K
      Participant

      Sally,

      For what it worth, March 3rd will mark 48 months for me on vemurafenib.

        • February 5, 2014 at 5:50 pm
        starletwoman2007
        Participant

        Hi 

         

        that is great news. Thank you for responding.

        • February 5, 2014 at 5:50 pm
        starletwoman2007
        Participant

        Hi 

         

        that is great news. Thank you for responding.

        • February 5, 2014 at 5:50 pm
        starletwoman2007
        Participant

        Hi 

         

        that is great news. Thank you for responding.

      • February 5, 2014 at 6:14 pm
      aldakota22
      Participant

      FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

      • February 5, 2014 at 6:14 pm
      aldakota22
      Participant

      FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

      • February 5, 2014 at 6:14 pm
      aldakota22
      Participant

      FYI  I was on "Z"   as soon as it was appoved and the drug effectively worked for a little over 20 months. The side affects I did have were all tolerable.None really lasted the whole 20 months.Now I am on it replacement   Tafinlar and the MEK inhibitor.The combination seems to be working .Remember each fighter here is different .You may be a lucky one like Dick.Prayers sent your wayBeat the Beast.     aldakota

      • February 5, 2014 at 6:18 pm
      POW
      Participant

      Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

      For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

      • February 5, 2014 at 6:18 pm
      POW
      Participant

      Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

      For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

      • February 5, 2014 at 6:18 pm
      POW
      Participant

      Tim Turnham, the executive director of the MRF, and one of our members, Kyle, attended a major melanoma conference last week. They both reported that data now shows that it is better to start with a BRAF + MEK inhibitor (right now that means Tafinlar + Mekinist) rather than a BRAF inhibitor alone. 

      For more information read "Some Treatment Options Updates" at: http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates

        • February 5, 2014 at 6:45 pm
        POW
        Participant

        By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

        What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

        Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

        • February 5, 2014 at 6:45 pm
        POW
        Participant

        By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

        What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

        Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

        • February 5, 2014 at 6:45 pm
        POW
        Participant

        By the way, it is true that vemurafenib works for an average (only an average, mind you) of 6-9 months before your tumors become resistant. I think that Tafinlar + Mekinist has a similar timeline– maybe a little longer.

        What most melanoma oncologists seem to recommending now for widely disseminated tumors or brain/spinal cord tumors is BRAF + MEK first because it acts quickly. Then when the tumors have shrunk and/or stabilized they switch the patient to an immune-based therapy that takes longer to work but also lasts longer. While dabrafenib (Tafinlar) does seem to work on brain tumors, it is less effective than on tumors elsewhere in the body. So most doctors recommend either stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or neurosurgery or, where necessary, whole brain radiation to treat brain mets even if the patient is getting systemic therapy. 

        Since you have Stage IV melanoma, especially with brain mets, it is very important that you be treated at a melanoma specialty center. They use a team approach of oncologists, radiation oncologists, dermatologists, etc who are all experienced with melanoma. Are you being seen at a center like that?

        • February 5, 2014 at 6:53 pm
        starletwoman2007
        Participant

        Hi 

        Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

        • February 5, 2014 at 6:53 pm
        starletwoman2007
        Participant

        Hi 

        Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

        • February 5, 2014 at 6:53 pm
        starletwoman2007
        Participant

        Hi 

        Yes i am being seen at a melanoma specialist centre, although i live in the UK so they treat other cancers too. However, they have only recommended that i take vem on its own to start. However, reading the posts on here its sounds like i need to ask about it being given in combination with other drugs. 

        • February 5, 2014 at 7:05 pm
        POW
        Participant

        The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

        • February 5, 2014 at 7:05 pm
        POW
        Participant

        The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

        • February 5, 2014 at 7:05 pm
        POW
        Participant

        The BRAF+MEK combo has not yet been approved in Canada. That might be the situation in England, too.

        • February 7, 2014 at 9:23 am
        JerryfromFauq
        Participant

        As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

        • February 7, 2014 at 9:23 am
        JerryfromFauq
        Participant

        As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

        • February 7, 2014 at 9:23 am
        JerryfromFauq
        Participant

        As stated above, It is better to get on the combo if possible.  As several have noted, it is only the median of the patients that it startes working on that has it stop working in under 1 year.  This then means that for the other 50% it works for over one year.  While the negative side effects are worse with just the BRAF drug alone and reduced with the combo which is is also more efective, It can work much longer and hopefully the government will get their —- out of their — and provide the best treatment for the people in the mean time.  The combo was just approved by the FDA for the USA.

        • March 9, 2014 at 12:11 am
        pigs_sty
        Participant
        Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
        • March 9, 2014 at 12:11 am
        pigs_sty
        Participant
        Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
        • March 9, 2014 at 12:11 am
        pigs_sty
        Participant
        Hi, where are you being treated if you don’t mind me asking. We have an appointment at the bobby Robson centre in Newcastle on Monday with a melanoma specialist. I’m also looking in to options at christies in Manchester. Stay strong
      • February 6, 2014 at 5:15 pm
      mary in Rhode Island
      Participant

      Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

      how long or how well it will go.  We just GO!  Best wishes to you.

      • February 6, 2014 at 5:15 pm
      mary in Rhode Island
      Participant

      Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

      how long or how well it will go.  We just GO!  Best wishes to you.

      • February 6, 2014 at 5:15 pm
      mary in Rhode Island
      Participant

      Hello, I have been on it for 27 months.  So far so good.  Scan next week.   I don't believe anyone knows

      how long or how well it will go.  We just GO!  Best wishes to you.

Viewing 11 reply threads
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